Playground Play date

Last weekend, we had a quick trip to Luling for a family Christmas, doctor appointment, and to cheer on our the Neville Tigers and Destrehan Wildcats. (Way to go Neville!!!) No trip would be complete without a visit to the Miracles To Milestones Playground.

Saturday morning, we jumped up, stayed in our pj’s, had breakfast with Aunt Sally, then rushed over to the playground. As I drove up, I was pleasantly surprised. Tears filled my eyes as I sat in awe at the amount of cars parked and the number of kids running and playing. It was perfect.

The kids played, Benjamin drove the cars, I ran him up and down the ramps, played the musical instruments, rocked in the boat, and rocked in the egg. KC asked Benjamin if he wanted an egg, and he nodded yes. 😍








To Ms. “I Understand”

Wednesday morning started off like any other. Get the kids up and off to school, while feeding and changing Rush, and talking to Benjamin and his nurse. All was uneventful until I had to make a call to a billing company I have called 10 times in the last 10 months. TODAY, they decided that they were NOT allowed to share any information with me since KC is listed as primary. My husband is awesome, but has no idea about Benjamin’s medical insurance or billing. As my frustration built, the nice lady on the phone stated “I understand your frustration.” (Here I must explain how my husband and I compare our tempers. Him: Short fuse, small bomb. Me: Long fuse, large bomb) I cried and yelled all while apologizing saying, “I know this is not your fault,” but this is what I would really like her to “understand.”

To Ms. “I Understand”,

You don’t understand nor will you ever understand. Just like I don’t understand your situation. I understand training has taught you to attempt in a scripted way to sympathize with the client, but this technique has it all wrong. You don’t understand that I’ve spent hours on the phone with the same company since February dealing with this bogus claim. You don’t understand that I am the only person that deals with the billing of my son’s account, and if you want anything done you better talk to me.

Let’s see if you can understand. Do you understand how it feels to have a son live and rely on electricity? Do you understanding how crazy it can be not only do your job, but apparently everybody else’s? (Maybe) Do you understand what it feels like leaving your house, fearing if anything happens, you will never be able to live with yourself? Do you understand how it feels to watch parents play with and carry their two-year-old, knowing your son isn’t comfortable being held and it makes it difficult for him to breath? Do you understand that going on vacations takes months to plan not because of finances, but because you have to spend all that time trying to find activities that your child can actually enjoy? Do you understand how it feels to “hunker down” for the Holidays in fear of catching another cold or worse the flu, while everyone else is out celebrating ? Do you understand what it’s like to not get a good nights sleep in years? Do you understand what it’s like to have saved your son’s life so many times you can’t even count? Do you understand what it’s like to always keep smiling even though little bit of you is just angry? Do you understand how hard it is to find a Christmas gift for a kid that can barely lift his arm? Do you understand how it feels to watch little ones like your son gain their angel wings way too early, and know that your son could be next? Of course you don’t.

But I also don’t expect you to understand what a difference he has made my life. I don’t expect you to understand how Benjamin has saved me and made me a better person. (Expect maybe for this call) I don’t expect you to understand how truly happy he is despite his lack of movement. I don’t expect you to understand the love that we have for such an amazing little boy, but the frustration that I have dealing with companies that take time away from him.

Just like I don’t expect you to understand my situation, I don’t understand your situation either. I don’t understand situations of abuse, hunger, or neglect. I don’t know what you have been dealt in your life. So let’s stop trying to “understand,” and just be there for one another trying to help each other get along in a world that can be so difficult at times. I don’t find our situation any more difficult than anyone else’s, but I am pretty sure you can’t “understand” mine. We are not just an account number or a patient, we are a family that works very hard on a daily basis to stay happy, healthy, full of faith, and sane.


Ms. “I will never understand, therefore, I lean on Him.”

“Sometimes being a brother is even better than being a superhero.” Marc Brown